Yes I do, mainly at base of neck. Have had various investigations. X-rays, MRI. Have some osteoarthritis, some degenerative disc disease, bulging discs at C4-5, 5-6, 6-7 and T3-4. Have lost the natural curve in neck. Getting kyphosis.
No Chiari malformation, as had an MRI.

Had some facet block injections into arthritic facet joints about 1 year ago, at 2 levels on either side. This gave good pain relief for the whole area.

I am starting to think that I have Marfan's, Loey-Dietz, EDS or similar as the reason behind a lot of my issues, so I am going to ask Rheumy about those. I am also going to a genetics clinic, hopefully Feb-March next year, & a neurogenetics clinic in Nov this year.

People with Marfan's & Loey-Dietz can suffer Dural Ectasia at lower spine and sometimes in cervical spine.

I am due some more facet block injections (xylocaine, marcaine, cortisone) but there is a risk that if there is any infection present, the infection could flare. Considering my options.
The whole neck area can be unstable if you have an underlying connective tissue disorder, as in Marfan's all the ligaments are weakened & less elastic due to insufficient fibrillin.

I have had a lot of pain and inflammation in my spine, especially base of skull and between shoulder blades. Also tightness and restriction. It has taken me ages to realise the feelings I was getting stemmed from these areas.They seemed to flow or trickle from my skull, down my back, then sort of out around my shoulders and below, as if it was something taking hold and absorbing me.

I then watched a dvd, cant remember what is it called at the moment,(voices/shadows/me??) anyway, it mentioned a few people with cfs/me had deep dorsal ganglionitis, so after a bit of googling, wondered if a spinal check would be a good idea.

So, I booked one, found c2 c3 and c4 were misaligned, and had a lot of tight trigger points and a slight rotation in my right hip/pelvis.
The next few weeks I found less pain and strange feelings in my body. I had a second treatment two weeks from first one, much much better and straighter, T3 and T4 needed slight adjustment.
Again I felt a lot better physically. He said i didnt need to see him for another month and that would be like a top up, but I personally felt I needed one earlier just incase anything had slipped back into its old ways, so am having another session tomorrow.

Over the past few years, before I realised I was ill, I thought I was just getting older, hence the aches and pains, and my body had had a few accidents, i rolled my vehicle, had a nasty fall from my pony, and the general knocks and scrapes, so I thought it was just the way I was going to be for ever.
Am so pleased I had the spinal check, and followed it through, and would recommend anyone with pain or restriction in spine or head to get checked. I used a guy who is osteo and mctimnony.

Yes, that is my number one pain/symptom. I feel as if it is weighing me down with a thousand pounds, and I kind of feel if only I could cut that part of my head out then everything would be okay :-(.

I unfortunately do not have much advice for what it is or how to deal with it. However, a few years ago I went to a skilled doctor of osteopathy who did chranial-sachrial therapy. I had major improvements on the pain and sensory senses, but unfortunately it only lasted each time for two or three days before hitting back. Also, my vision changed. (I rewent to another one after I moved, but had no luck with that one. I guess some are more skilled than others. Also, I was told that those with a DO can do a lot better than those who just know the therapy, as it involves moving the spinal fluid throughout the body)

I have had a lot of pain and inflammation in my spine, especially base of skull and between shoulder blades. Also tightness and restriction. It has taken me ages to realise the feelings I was getting stemmed from these areas.They seemed to flow or trickle from my skull, down my back, then sort of out around my shoulders and below, as if it was something taking hold and absorbing me.

I then watched a dvd, cant remember what is it called at the moment,(voices/shadows/me??) anyway, it mentioned a few people with cfs/me had deep dorsal ganglionitis, so after a bit of googling, wondered if a spinal check would be a good idea.

So, I booked one, found c2 c3 and c4 were misaligned, and had a lot of tight trigger points and a slight rotation in my right hip/pelvis.
The next few weeks I found less pain and strange feelings in my body. I had a second treatment two weeks from first one, much much better and straighter, T3 and T4 needed slight adjustment.
Again I felt a lot better physically. He said i didnt need to see him for another month and that would be like a top up, but I personally felt I needed one earlier just incase anything had slipped back into its old ways, so am having another session tomorrow.

Over the past few years, before I realised I was ill, I thought I was just getting older, hence the aches and pains, and my body had had a few accidents, i rolled my vehicle, had a nasty fall from my pony, and the general knocks and scrapes, so I thought it was just the way I was going to be for ever.
Am so pleased I had the spinal check, and followed it through, and would recommend anyone with pain or restriction in spine or head to get checked. I used a guy who is osteo and mctimnony.

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Best of luck with all that. I had vehicle accidents too. I think that disk is damaged. It hurts, grinds, causes spasm across my shoulders. Trying to ignore it.

But it does seem to come and go. So I know it won't go on forever. I'll see what the future holds though.

I have constant, continuous pressure in the back of my head/base of the skull. When I saw a D.O. who does cranial osteopathy, as soon as she started to work at the base of my skull I felt the pressure begin to relieve for the first time. It was such an intense sensation of relief, I nearly passed out! She said that the bones there were compressed inward, putting pressure on my brain, the nerves in that area, and affecting blood flow as well.

This isn't my only structural problem, not by a long shot, but it was one of the more profound sensations of relief I've experienced from it. I did find I had to make a lot of lifestyle and interpersonal changes for the treatment to translate into progress, but my PEM has been relieved, my Fibromyalgia is gone, my extremely widespread allergies are abating and after being mostly bedridden from 6 1/2 years with life-threatening issues several times a month I'm now walking around outside and doing more every day.

If you go to the cranial academy website, click through the agreement and search for one near you, you want those who practice it 100%. An asterisk* by the name is a bonus. There's one or two other directories, but that's the easiest place to find one.

Yes, that is my number one pain/symptom. I feel as if it is weighing me down with a thousand pounds, and I kind of feel if only I could cut that part of my head out then everything would be okay :-(.

I unfortunately do not have much advice for what it is or how to deal with it. However, a few years ago I went to a skilled doctor of osteopathy who did chranial-sachrial therapy. I had major improvements on the pain and sensory senses, but unfortunately it only lasted each time for two or three days before hitting back. Also, my vision changed. (I rewent to another one after I moved, but had no luck with that one. I guess some are more skilled than others. Also, I was told that those with a DO can do a lot better than those who just know the therapy, as it involves moving the spinal fluid throughout the body)

Good luck. If I find anything else that helps, I'll let you know.
Lo

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Lo, I've heard, and partially experienced, that every cranial osteopath does practice a bit differently. You might consider seeing another one whose approach might have a more lasting effect. My DO once explained to me that there are those who just do "textbook" work....which may be okay for easy cases. "But", he tells me, "you're not textbook". So finding the ones good with the complex cases like we tend to be can apparently make a big difference.

Yes I have this. It's not every single day, but it's a lot. If I get a migriane or aura that base of skull upper neck pain is on full blast.
I have some spinal damage which I think was C5 and somewhere else lumber and thorasic but I can't remember which number. Neuros dismissed it as irrelevent but I'm not so sure and my chiro said the damage was light but enough to cause cord problems.
When I.m extra tachy (potsy) it's worse.

Don't know what to say really but I take migreleve when it's bad even though it's contra indicated with amitrip. I just make sure I leave a long gap between migreleve and the ami. I haven't had a full on migraine for a while thankfully, but the base of skull - neck and shoulder pain - that's all the time.
Sorry I haven't anything useful to say.

yep I have it, awful pain is one of my top complaints, besides the oxygen hunger which waxes and wanes throughout day and life. I think it is from neck injury from chiro manip that preceded my fms/cfs and found out have cerv stenosis and djd after and some hypermobility. cranial sacral increases the pain, maybe it increases spinal fluid and pressure. Dr Wood in Seattle has interesting theory on neck and fms and so did Dr Rosner and Dr Heffez 12 yrs ago.

One of the big mysteries to me, is how you can have people who crash after exertion, but just feel really "tired", but with no SOB. And then you have people like us, and with me, I won't be even close to a crash, and still get SOB at seemingly random times, or during exertion.

thanks for mentioning dorsal root ganglionitis, forget who been off researching last few mins but this is interesting because I have sjogrens:http://www.medlink.com/medlinkcontent.asp
thing is i couldnt find any good solutions and its another thing, research from the 70s and 80s and then drops off....wth? its not just CFS neglected, lots of things, I am thinking that its like that lymes movie "under our skin" some political changes happened in US in 80s with health ins and regs/rules of research sharing etc and its discouraged all sorts of research, and also nw its nationsal problem not as many people majoring insicience on top of it.If yr unlucky to get an illness that wasnt estalished before the 80s you may be SOL.

mattman, cheney has lots to say about oxygen hunger. most useful thing i do is hold my breath while lying down for a long as i can, exhale, do it over and over when in acute painful o2 hunger thing. he thinks its to much oxygen in most cases and to limit it there are some dvds if you google aaround. i have to go offline soon now but should be lots of info out there.

oh also wanted to add, i have figured out a theory for myself when i get in stinging awful spine pain flares which i have been this week, on cause, i was taking antivirals briefly this week and i also irritated my stenosis and it seems like messing with the infectious part plus aggravating my spinal or head nerves together is double whammy of flares that can last weeks or months sometimes. hope not this time.

yep I have it, awful pain is one of my top complaints, besides the oxygen hunger which waxes and wanes throughout day and life. I think it is from neck injury from chiro manip that preceded my fms/cfs and found out have cerv stenosis and djd after and some hypermobility. cranial sacral increases the pain, maybe it increases spinal fluid and pressure. Dr Wood in Seattle has interesting theory on neck and fms and so did Dr Rosner and Dr Heffez 12 yrs ago.

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I saw Dr. Wood a few times before he moved out of state (I forgot where he is now). Pain was pretty bad then. One part of the examination, he just lightly touched my arms on a specific trigger point, and I was yelping! 5 minutes later still squirming and moaning under my breath.

One thing to mention is that a major difference between cranial osteopathy and cranial-sacral therapy is that cranial osteopathy addresses the entire body, not just the spine and head. Spine problems can be caused by a strain in the fascia elsewhere that's pulling things out of alignment. If all they ever do is try to align the spine, then it'll probably either be just temporary improvement or could even make things worse.

It's so important to know how every structure affects other structures, to be able to properly untangle the mess. Just like you can't take a tangle of string and unwind it by pulling on whatever loop you can find, so also you can't hope to fix the body just by aligning all the problems directly as discovered. The practitioner must be able to combine extensive knowledge of human anatomy with what their hands are telling them to find just which area holds the key to unlocking specific strains.

Wow, lots to think about. Right now, what I've read is all jumbled together. Something I read suggested a hereditary malformation resulting in a slightly humped back (similar to osteoporosis look) which definitely runs in the women in my family, including myself.

Dainty, I used to see a practioner who does "fascial integrative therapy" which combines cranial-sacral work with myofascial work and other things. Frankie is licensed as an OT, and has studied several types of body work. Her work helped me immensely. I had severe body-wide stiffness and pain . It's been a few years, and I'd love to go back for some more sessions, but the $120 non-insured cost is an impediment - along with the hour's drive to get there. It's more likely that Medicare will cover a DO. Next year I'll be back on standard Medicare, so that will broaden my options.

Dainty, I used to see a practioner who does "fascial integrative therapy" which combines cranial-sacral work with myofascial work and other things. Frankie is licensed as an OT, and has studied several types of body work. Her work helped me immensely. I had severe body-wide stiffness and pain . It's been a few years, and I'd love to go back for some more sessions, but the $120 non-insured cost is an impediment - along with the hour's drive to get there. It's more likely that Medicare will cover a DO. Next year I'll be back on standard Medicare, so that will broaden my options.

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Glad you found someone who helped you so much. Relief is golden!

I snatched a paper from my D.O.'s office that mentioned a difference between D.O.s and therapists that I found interesting: "Osteopathic physicians evaluate and diagnose at each visit, and will change the treatment accordingly. A therapist evaluates once and does a series of sessions to see if there has been any change."

Another thing my D.O. clarified for me is that myofascial techniques actually came from the osteopathic profession originally, as did visceral manipulation, counterstrain, and of course cranial-sacral work as well. These, as well as other techniques I cannot currently name, were all initially part of the whole of osteopathic manual medicine, but were basically subsidized into therapies so that massage practitioners, physical therapists, OTs, chiropractors, dentists, and others could integrate them into their work.

The advantage is that these techniques can certainly improve the quality and effectiveness of that therapy. The disavantage is that without the entire range of osteopathic techniques at one's disposal, it's like working with a toolbox that has more than half the tools missing. So some "tools" are used inappropriately for jobs that would have been more gently and easily accomplished by the proper "tool", while other parts of the job are considered unfixable which may become fixable if the proper "tool" was at hand.

DOs are generally the best ones to see, but apparently some MDs actually do practice this regularly. They are rare, but do appear in the directory I linked to. Dentists, too. So if anyone needs to see an MD or DDS for insurance purposes, that's one possiiblity. Note, MDs would probably be more likely to be allopathic physicians administering cranio-sacral therapy than to be actually practicing the entire range of ostoepathy.

I have had a lot of pain and inflammation in my spine, especially base of skull and between shoulder blades. Also tightness and restriction. It has taken me ages to realise the feelings I was getting stemmed from these areas.They seemed to flow or trickle from my skull, down my back, then sort of out around my shoulders and below, as if it was something taking hold and absorbing me.

I then watched a dvd, cant remember what is it called at the moment,(voices/shadows/me??) anyway, it mentioned a few people with cfs/me had deep dorsal ganglionitis, so after a bit of googling, wondered if a spinal check would be a good idea.

So, I booked one, found c2 c3 and c4 were misaligned, and had a lot of tight trigger points and a slight rotation in my right hip/pelvis.
The next few weeks I found less pain and strange feelings in my body. I had a second treatment two weeks from first one, much much better and straighter, T3 and T4 needed slight adjustment.
Again I felt a lot better physically. He said i didnt need to see him for another month and that would be like a top up, but I personally felt I needed one earlier just incase anything had slipped back into its old ways, so am having another session tomorrow.

Over the past few years, before I realised I was ill, I thought I was just getting older, hence the aches and pains, and my body had had a few accidents, i rolled my vehicle, had a nasty fall from my pony, and the general knocks and scrapes, so I thought it was just the way I was going to be for ever.
Am so pleased I had the spinal check, and followed it through, and would recommend anyone with pain or restriction in spine or head to get checked. I used a guy who is osteo and mctimnony.

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Had my 3rd session, it was fab. Very slight tweaks in vertebrae. The trigger points were fine too, AND i have more freedom in my right arm than i have had for about 10yrs so that bits a bonus! hehe. He worked on my jaw again too, and back of skull. He suggested I didnt need to see him again until January for a top up, but if I have any concerns, to see him earlier. My muscle memory has behaved well and I am really pleased.
I have no discomfort in my spinal area now. The wierd trickle feelings have gone too.

I've had very bad neck and back pain throughout my illness, and many different kinds of treatment, so I'll pass on what has been helpful for me.

Out of all the therapies, most were of some temporary help, but few if any provided lasting relief. A big breakthrough for me came with an 8-week course for chronic back pain sufferers, a local NHS service. This was a superb course, and I learnt a lot, particularly about the importance of using pain killers rather than suffering the pain, as this does actually help as a treatment for the back injuries and the associated inflammation and the therapeutic benefits greatly outweigh the risks associated with long-term painkiller use (especially if you understand the dosage limits and the reasons for them) - painkillers are also a treatment, they are not just for killing pain. But the biggest breakthrough of the course came on the last day when I had specialised physio attention. Multiple physio sessions had failed to help because the general exercises designed to strengthen my back muscles never got to the root of the problem. At last - after nearly a decade of treatment - I learned a simple exercise that worked for me: hard to described, but I pull back my head leaving my shoulders relaxed, keeping my head upright but effectively straightening my neck, and tucking my chin so that I get a 'double chin'. Can't really describe it better than that, but this strengthens the relevant muscles and also provides instant relief. With that dealt with, all the referred back pain is relieved. So my first conclusion from all that is that what one is really looking for is the precise, simple exercise that really gets to the root of the problem. And the second conclusion is that it really is true that physio and postural work really is the only way to deal with these problems long-term: all the other treatments manipulate your back into a 'better' position, but unless you train your muscles to keep it there, the problem will just keep coming back.

The next big issue for me was as simple as getting a good night's sleep. I think most of us are aware that we don't get proper good quality sleep, and this isn't just solved by sleep medication or any of the other sleep hygiene methods (though they can help a bit for some), there are other (various) underlying medical reasons why we don't ever get into deep sleep. The first night I got a proper night's sleep, after many years, came when I first got a complete new (tempur) mattress and complete new set of bedding. I didn't last long in it (about a week) before I 'detoxed' onto it and 'infected' it and there was an £800 bed I can't sleep in any more because it makes me itch like crazy (which I think is fundamentally what stops me from getting deep sleep). Now I sleep on a semi-aniline leather (and hence flame-retardant-free) sofa. But anyway: the fundamental observation here is that the first time I got a good night's sleep, my back and neck pain vanished. And ever since then, it is very noticeable indeed that when I get a poor night's sleep, or a short night's sleep, my neck and back pain returns, and any other muscle aches and pains are also retained from the previous day. It's very clear indeed to me that deep sleep is essential to the body's healing processes. Without that deep sleep, chronic back pain is very hard or impossible to solve; with that deep sleep, even quite serious problems can be greatly relieved. (There can be a vicious circle to break here, of course, because any kind of pain can prevent deep sleep).

My final tip is posture. In some recent new advice this year (I think I actually saw this on the TV programme "QI" this year), the boffins have finally overturned the previous advice to "sit up straight" and the associated postural advice for sitting at computer workstations, which everyone from physios to occupational health to health and safety instructors had been dishing out since time immemorial. Now, at last, some boffins or other have figured out what I learned the hard way: What everybody was telling me when they told me to adopt that classic "sit up straight" "hard-working" right-angled posture is just about the worst thing you can do to your back. In fact it's now recognised that it's actually better to slouch with your bum well forward and your head back, just as I had always done before my onset, and just as I've been doing for the last 5 years or so against all advice from back specialists. I work from home, on the sofa, with my head back resting on the sofa and my back slouched and curved, just as one was told not to do (before this new research), and that's what enabled me to resume my career and now enables me to work all day every day like this without back and neck pain. I'm not necessarily saying that's universally good advice (though I suspect it is) but I would say that trusting your own instincts about what is a comfortable and sustainable position for you, even if others are telling you differently, can often make a very positive difference.

Final note: there is some suggestion that neck injuries (eg from whiplash) causing chronic neck pain can lie at the root of a lot of chronic illness and may be associated with a lot of "CFS". I think there are a few possible mechanisms here: effects of damage on the nervous system may potentially have all kinds of destabilising effects on all the body's systems, and affect nerve activity and hence other forms of pain, and also there are secondary mechanisms from the chronic pain such as inflammation and loss of sleep, as already mentioned. So if there's a bottom line to all my thoughts above, it would be: this is an issue well worth persevering with until you find effective relief, it can be connected to your other health problems, you need to find individual solutions, physio treatments and individual exercises affecting the underlying muscles are the ideal for long-term solutions, and getting good deep sleep is also crucial both as cause and effect.